Submission on the NDIS Amendment Bill

Name: redacted Email: redacted Submission requested to be treated as anonymous I am a: Full-time caregiver of an adult NDIS participant and grandmother of multiple NDIS participants.

My main concern about this Bill is

I am concerned that proposed changes to the NDIS may reduce access to supports, increase reliance on informal carers, weaken review and appeal rights, increase reliance on standardised assessments, and reduce opportunities for people with disability to participate safely in their communities.

Unlike many people commenting on these reforms, I view them through two lenses. I am the full-time caregiver of an adult NDIS participant who will require support for the rest of her life. I am also the grandmother of multiple NDIS participants with significant and ongoing support needs.

I have spent many years witnessing what happens when disability supports are present and what happens when they are not. The difference is profound.

This Bill may affect me because

I am the primary informal support person for an adult family member with disability who relies heavily on formal NDIS-funded supports to maintain her quality of life, independence, community participation, and wellbeing.

As I age, I am increasingly aware that my ability to continue providing support will not last forever. The reality is that my family member’s disability will not disappear as I get older. Her support needs will remain.

In many respects, her reliance on formal supports will need to increase over time as my ability to provide informal support decreases.

I am concerned that reforms may increase expectations on ageing carers at precisely the stage of life when they are least physically able to absorb additional responsibilities.

I am also concerned about the impact these reforms may have on my grandchildren and their families, many of whom also rely on disability supports to live safely and participate in their communities.

One example from my experience

As a long-term caregiver, I have witnessed how essential formal disability supports are in preserving both independence and family relationships.

The person I support has lifelong disabilities and will require assistance for the rest of her life.

My goal has never been to remain her primary support forever. My goal has always been to help her build a life where she can access appropriate formal supports, maintain community connections, exercise choice and control, and continue living a meaningful life as I gradually step back from intensive caregiving responsibilities.

That is what successful disability support should achieve. It should allow ageing carers to age with dignity while ensuring that people with disability continue to receive the support they need.

Without adequate formal supports, ageing carers are left carrying responsibilities they are no longer physically, emotionally, or practically able to sustain.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2829

What I want the committee to understand

Families cannot replace appropriately trained disability support workers.

Families provide love, connection, advocacy, and emotional support. They cannot always provide specialised disability supports, behavioural supports, personal care, community access, transport, supervision, or complex support coordination.

I am concerned about any reforms that assume informal support networks will simply absorb responsibilities that are currently undertaken by funded supports.

I have watched the impact of disability not only on the individual participants but across entire family systems. I have watched parents live in survival mode, siblings lose opportunities and relationships, and grandparents become increasingly worried about what happens when they are no longer here.

The purpose of the NDIS should be to reduce those burdens, not increase them.

As a grandmother, I share many of the same concerns as other family members. Community participation is not a luxury. It is how people maintain relationships, develop skills, remain connected, and avoid isolation.

When community supports are reduced, people become isolated and families become isolated alongside them.

Concerns about proposed reforms

I am concerned about increased reliance on standardised assessment processes. People with disability are individuals. Their support needs, strengths, risks, goals, and circumstances cannot always be accurately measured through standardised tools.

I am also deeply concerned about any changes that weaken review and appeal rights. Over many years I have seen how important review processes are when decisions do not accurately reflect a person’s disability-related support needs.

For many participants and families, review rights are the only safeguard against incorrect decisions.

I support participants continuing to have access to internal reviews, independent reviews, and independent merits review through the Administrative Review Tribunal (ART).

Recommendations

1. Maintain adequate disability funding for people with lifelong and complex support needs.
2. Protect community participation supports that reduce isolation and maintain meaningful familyand community connections.
3. Ensure disability-related supports remain the responsibility of appropriately trained and fundedprofessionals rather than ageing family members.
4. Preserve a person-centred approach that recognises individual circumstances and goals.
5. Avoid over-reliance on standardised assessment tools when determining support needs.
6. Preserve participants’ rights to internal review, external review, and independent merits reviewthrough the Administrative Review Tribunal.
7. Maintain strong independent oversight of NDIS decision-making.
8. Recognise the unique challenges faced by ageing carers supporting people with lifelongdisabilities.
9. Ensure NDIS reforms support long-term planning for participants whose support needs willcontinue after their ageing carers can no longer provide assistance.
10. Ensure NDIS reforms strengthen families rather than increasing reliance on unpaid informalcare.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2829

Closing statement

As an ageing caregiver and grandmother, I think often about the future. Disability does not disappear when carers grow older. If anything, the need for strong formal support systems becomes even more important.

I want to see an NDIS that remains person-centred, protects human rights, preserves independent review rights, supports community participation, and recognises the realities faced by ageing carers and families.

Most importantly, I want to see an NDIS that allows people with disability to live meaningful lives while allowing families to remain families. That is what good disability support makes possible.